Patient and Family Perspectives on Respect and Dignity in the Intensive Care Unit

Abstract

Respect and dignity are central to moral life, and have a particular importance in health care settings such as the intensive care unit (ICU). We conducted 15 semistructured interviews with 21 participants during an ICU admission to explore the definition of, and specific behaviors that demonstrate, respect and dignity during treatment in the ICU. We transcribed interviews and conducted thematic qualitative analysis. Seven themes emerged that focused on what it means to be treated with respect and/or dignity: treated as a person; Golden Rule; acknowledgement; treated as family/friend; treated as an individual; treated as important/valuable; and treated as equal. Participants described particular behaviors or actions that were considered related to demonstrating treatment with respect and dignity: listening; honesty/giving information; attention to body/modesty/appearance; caring/bedside manner; patient and family as an information source; attention to pain; and responsiveness. These behaviors provide a framework for improving experiences with care in the ICU.

Patient perspectives of maintaining dignity in Indonesian clinical care settings: A qualitative descriptive study

“…Responsiveness has been demonstrated to be a fundamental element for maintaining dignity in health care (Beach et al., ; Darby, Valentine, Murray, & De Silva, ; Lin, Tsai, & Chen, ; Nayeri et al., ) and is believed to promote patient‐centred care (NCGC, ). Previous studies have reported nurses’ caring characteristics provide dignity (Beach et al., ; Lin et al., ). Participants’ perception that their care resulted from the nurse's altruism was an important caring characteristic in our study.…”

ICU-RESPECT: An index to assess patient and family experiences of respect in the intensive care unit

“…In addition to its reliability, we are confident of the "ICU-RESPECT" index's face and content validity because our item development process was based on a robust, multi-method approach to defining the construct of respect in the ICU setting from the perspectives of patients, families, clinicians, and independent observers [9][10][11][12][13]. Furthermore, the concurrent validity of the scale is demonstrated by its ability to distinguish between groups, in this case, different intensive care units.…”

“…The research team developed an initial set of items for the draft instrument based on the literature, as well as qualitative analysis of the transcripts of interviews and focus groups, and direct observations, discussed in detail elsewhere [11][12][13]. Each of the specific types/sources of respect/disrespect identified by a participant or a direct observer was converted into a discrete candidate item for inclusion in a questionnaire.…”

“…However, study investigators agreed that it was important to retain this item for conceptual reasons. Our previous research [10][11][12][13] revealed that "introductions" is an important domain of respect. Removing any other items would have resulted in a decrease in internal consistency of the index, and all other items had an item-to-total correlation of at least 0.6.…”

“…To address the gap in our understanding of how patients and families experience respectful treatment in the ICU, and our ability to measure it, we previously conducted a multi-method study of respect and dignity in two ICUs at one large, academic medical institution [9][10][11][12][13]. Based on interviews with patients and their families, direct observations and clinician focus groups, 12 broad themes emerged that characterize what it means to be treated with respect.…”